The short of it:
- John continues to be very ill and in pain but tests are holding steady
- Biopsy is set for tomorrow with two full weeks for recovery
- Chemo on hold until we see biopsy results
- Request from me: please no visitors, texts or calls to John for at least 48 hours
The long of it:
John remains hospitalized. Pain comes and goes in waves ranging from uncomfortable to severe. There is no rhyme or reason. He is on an all liquid diet since last night to help decrease the swelling in the small intestine that is most likely the culprit for the blood in the stool, which has lessened but continues. His blood count remains good (they were worried about the amount of blood in the stool, ...if that could lead to a transfusion) and while there is still increasing amounts of protein and blood in the urine, his kidney functioning tests remain good. They have concluded, however, that there is in fact damage to both kidneys as a result of the vasculitis. The biopsy should help determine the severity of that, may assist with a correct diagnosis, and will also show if there are any other problems with the kidneys that may be caused by his life long kidney diesase. Beyond that, things are similar to how I left him last night.
They have decided to move ahead with the biopsy tomorrow. It will be a very long, difficult day. He starts fasting including all liquids (which is difficult b/c the steriods make him thirsty and the vasculitis dries out his mouth) at midnight tonight. They'll take him down to the CT area at 9am and prep him. The procedure is at 11am. They will insert a long needle into his kidney via his back and take three samples from one kidney (which ever one has been testing worse). He cannot breath during the procedure, as that would make the kidney move and casue a laceration and bleeding. That fact sort of freaks him out b/c they didn't say how long he would have to hold his breath. After it's over they will hold him for four hours to take blood levels. If his levels are good he can be moved from recovery back to his room. If not, then they keep him longer and continue testing levels every few hours. Once he's back in his room he is not allowed to move AT ALL for 24 hours. Flat on his back, awake or asleep. He cannot get up to go to the bathroom or eat. He will have to stay in bed and be assisted. This is crucial to his not causing internal bleeding. After that he cannot lift anything heavier than two newspapers for two full weeks.
We are still in limbo about the chemo. We are waiting to see if there is anything conclusive in the biopsy.
We do have a few requests of friends and family. Due to John's compromised immune system and current illness (which may or may not be viral) the doctor's are preferring no visitors. He is contagious to you, you are contagious to him. The difference is, your contagion could be fatal to him. Also, we are requesting that loved ones please stop texting him. It is hard to understand how much pain he is in when you are not there. Swelling in the joints (all joints, including wrists and fingers) make it hard some days to hold a pen or cup, yet alone return text an entire message. Even on the days that the swelling is down, he is still very very ill. It frustrates him not to be able to return a message so he tries to force himself. This is just unnecessary, so as his wife I am respectfully requesting that people please not text him for at least the next 48 hours if not a bit longer. Tomorrow he will be in procedures all day anyway and the day after that he is not allowed to move at all...that includes twisting to reach his cell phone to see who's just sent him a message. So please, let him rest. If you want to you can always call but again, the steroids make it very difficult for him to sleep. He goes for entire days (literally) without sleeping so when he finally nods off and the nurses come in to poke and prode every few hours that's bad enough. To finally fall asleep and have the phone ring...is very hard on him. I know that you all love him and that's why you want to contact him, but truly the best thing you can do for him right now is let him be. I pledge to update this blog as often as I possibly can so everyone is in the loop, in return for your letting him rest for at least the next few days. Thank you for respecting that.
Thank you to everyone who has helped us over the last ...I have no idea how many weeks. We truly appreciate it and I do not know how I could be doing what I need to get done without the help of my support people (you know who you are) =)
Continue the prayers. Things are bad but they could always be worse. Prayer works.
For those of you who ask me what to pray specifically;
For John: please pray that tomorrow's procedure AND recovery goes off without a hitch, that the docs rememebr all they learned in school with steady hands, keen eyes and clear head, and that the biopsy results are helpful to getting John on the correct road to accurate treatment and healing. And that pain is lessened. That prayer is always needed.
For the kids: courage. They are currently somewhat freaking out, each in their own way, about John's hospitalization and tomorrow's test. (fyi: Mary continues to throw up and the boys continue to cough up a lung).
For me: strength.
Thank you so much,
k
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